Just diagnosed in NC last night

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packfan11
New Member


Date Joined Apr 2011
Total Posts : 15
   Posted 5/10/2011 4:58 AM (GMT -6)   
My husbands Uro spoke with me late last night as my husband was at work. He started off by saying that they found cancer in 10 out of 12 samples and they ranged from 25%-89%. I asked for a stage and/or gleason but he told me he couldn't give me that answer until 2 tests were performed this week. One test is a bone scan and the other x-rays of the lymph nodes. The nurse is supposed to call this morning to set that up. He then said for my husband and I to come to his office next Tuesday for a meeting and he would have the results of these tests by then. I am at a total loss right now and telling my husband he had cancer was the hardest thing I've ever had to do. Any advice before the meeting would be most helpful.  

Steve n Dallas
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Date Joined Mar 2008
Total Posts : 4849
   Posted 5/10/2011 5:07 AM (GMT -6)   
Just try to relax and take it one day at a time..

packfan11
New Member


Date Joined Apr 2011
Total Posts : 15
   Posted 5/10/2011 5:07 AM (GMT -6)   
I forgot to include his pre biopsy info. Age 61, DRE-abnormal, PSA 3/2011-10.44, testosterone-214.

overthepond
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Date Joined Apr 2011
Total Posts : 648
   Posted 5/10/2011 5:14 AM (GMT -6)   
My heart goes out to you, it was like the rug had been pulled from under us when my husband was diagnosed.
Try to stay calm. Your head will be spinning but read, read and read more and make sure you have a list of questions ready for when you go to the appointment and make notes whilst there too.
Good luck and sending you a hug from the UK
x

Husband’s Age 62
Excellent health
First PSA test 7
Second PSA two months later 11
Biopsy results: Gleason 3+3 in two cores (right medial 30% and right apex 90%)
PSA11 with small benign-feeling prostate
10 Feb 2011 – Brachytherapy – Iodine 125

142
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Date Joined Jan 2010
Total Posts : 7085
   Posted 5/10/2011 8:23 AM (GMT -6)   
It sounds like you will need to go to the meeting with the doctor "prepared". My positive cores were 9 of 12.
 
You will want to get a copy of the report for the lab that evaluated the biopsy samples. The bone and CT scans are a bit controversial as they are sometimes not really needed, but they were reassuring for me.
 
If you will go to www.yananow.org you will find a lot of resources, and somewhere in all that, a list of questions to ask your physician. (That link is http://www.yananow.org/questions.htm ).
 
Also check the "resources" thread at the top of this forum. At the very bottom there is a link to the "really useful information" thread which will also be of help.
 
Check your local library for books:
Dr. Patrick Walsh's Guide to Surviving Prostate Cancer (2nd Ed.)
Dr. Peter Scardino's Prostate Book (2nd Ed.)
 
You will want to get one for yourself, but you might start with a borrowed copy.
 
Also check at USToo.org for resources and possibly a local support group meeting.
DaVinci 10/2009
My adjuvant IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808

JNF
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Date Joined Dec 2010
Total Posts : 3887
   Posted 5/10/2011 8:55 AM (GMT -6)   
packfan,

As others have said, stay calm and start learning. While there is a lot to do, it will take time, information, and calmness to make the best decisions.

For comparisson, I was 12/12 positive and higher PSA. From diagnosis to initial treatment was about 5 weeks. In that time I saw two urologists, two radiation oncologists, and two medical oncologists. I read three of four books and scoured the internet and sites like this.

An additional book that I found very helpful is "Beating Prostate Cancer with Diet and Hormone Therapy" by Dr. Snuffy Meyers.

Best wishes to both of you.
PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.
Eligard shot and daily Jalyn started on 10-7-2010.
IMRT to prostate and lymph nodes 25 fractions started on 11-8-2010
HDR Brachytherapy 12-6 and 13-2010.
PSA <.1 and T 23 on 2-3-2011.
PSA <.1 on 4-7-2011

HD_Rider
Regular Member


Date Joined Apr 2011
Total Posts : 416
   Posted 5/10/2011 9:02 AM (GMT -6)   
I was just recently diagnosed myself and I know exactly what you are going through.

The most important thing you can do right now is remain calm. Once the initial shock subsides, and it will, the next thing you need to do is become as knowledgeable as you can on this disease.

You'll want to fully understand the biopsy report so you know what the numbers mean. Get a copy of the report and start building a file to contain all the documents you get from the doctors, what you find on-line, insurance, etc. Understand that every single case is unique to the individual. You'll want to research all treatment options and their pros / cons. There are a lot of factors that go into selecting a treatment plan and understanding what each entails will guide you towards the option that's right for you and your husband.

After speaking to the urologist, you may also want to speak to a radiation oncologist and maybe a medical oncologist to see what they have to say. You may also find that some treatment methods are not available in your local area and that travel may be needed depending on what treatment option you want to go with. Get up to speed on your health insurance, find out what they'll cover and what they won't.

Another good book to consider is "A Primer on Prostate Cancer: The Empowered Patient's Guide". You can either buy it or, as mentioned earlier, you might check to see if you have a local chapter of the Us-Too organization, who typically have copies of this and other books available for lending. It's also a good way to share with other folks who are or have gone through the same thing you are.

And you've found a great forum. There are a lot of people here with a lot of experience and are only too eager to share their knowledge and experience with others.

Just know that it's you and your husband running the show and it's up to you to make the decisions on how you want to proceed. Having as must knowledge as possible is critical towards making those decisions.

Hang in there.
John (HD_Rider) - Wichita, KS
Age: 49
PSA: 3.5, 6/07
PSA: 4.5, 3/11
Biopsy, 12 cores: 04/13/11
Dx: 04/19/11
Gleason: 7 (3+4) (primarily on right side with <5% on left side)
DaVinci: scheduled for 06/09/11, hoping and praying for the best

Macnmo
New Member


Date Joined May 2011
Total Posts : 4
   Posted 5/10/2011 9:32 AM (GMT -6)   
1. Why did the Uro talk to you and not him?
2. There are support groups for both men and women. If you and/or he has a real "acceptance"/"understanding" problem, I suggest you find one quick!
3. Both of you need to discuss the situation in detail with the Uro plus get as much info as you can via the internet in order to get all the info you can from the Uro or whatever Dr you consult with.
4. This is a mutual problem and should be something you discuss together, between yourselves and any Dr. you may consult with about his condition.
5. Our experience, although mine was the begining stage, was that I wanted the cancer out of me and no isotopes in me! My wife agreed with the decision and after 11 years of non-traceable PSA we are extremely happy with the decision.
71 YO now
 
I realize your husband is further along than I was, but communications and love are a good combination for success!!
 

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3996
   Posted 5/10/2011 10:17 AM (GMT -6)   
there were four of us on the initial consultation.  i asked the doctor what he would do if it were he instead of me.  with the stats you've provided i'd be looking at a combination treatment (like mine or JNF or tony T)  rather than a piecemeal approach.  you need to hit this thing with both barrels.  good luck to you.
 
ed
 
 
age: 56
PSA on 12/09: 6.8
gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10
2/8/11 PSA <.1, T= 6 ng/dl

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 5/10/2011 11:34 AM (GMT -6)   
Tell the doc you want a copy of the pathology report and any testings, done. The pathologists name is on that report....huge differences in everything as to whom are experts and whom are average docs. Verify anything said to you is worth your time.

Post Edited (zufus) : 5/10/2011 10:45:51 AM (GMT-6)


Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3892
   Posted 5/10/2011 11:40 AM (GMT -6)   
"He started off by saying that they found cancer in 10 out of 12 samples and they ranged from 25%-89%. I asked for a stage and/or gleason but he told me he couldn't give me that answer until 2 tests were performed this week."

Yes, he COULD have given you the Gleason score, unless he has sent the slides out for a second opinion...Since he withheld that, .................

I too am surprised the doctor told you of the diagnosis and not your husband directly. They very seldom do that...I would have your HUSBAND call him back and get the Gleason number so your research can be more focused...

Best of luck to you and welcome to the board...
Age 68.
PSA age 55: 3.5, DRE normal.
age 58: 4.5
61: 5.2
64: 7.5, DRE "Abnormal"
65: 8.5, " normal", biopsy, 12 core, negative...
66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
67 4.5 DRE "normal"
68 7.0 3rd biopsy positive, 4 out of 12, G-6,7, 9
RALP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT. 2-15-'11 PSA 0.0

packfan11
New Member


Date Joined Apr 2011
Total Posts : 15
   Posted 5/10/2011 3:27 PM (GMT -6)   
Many thanks to all who have responded! Your warm words and wisdom have been a comfort to me. It sounds like the first item of business is to gain all the knowledge we can about this disease. I have been researching online and plan on purchasing the books mentioned by members of this group. I don't think it has quite sank in with my husband yet. It is not that he is denying it, but he definitely needs to get involved with this. He doesn't want to talk about anything until he gets the final results on Tuesday. He has 9 grown children(whom he hasnt told yet) and 10 grandchildren and he has been a step-dad for the past 11 years to my 2 girls (14,17) who live with us. We all love him so much and want to help him through this process.
 
The reason the uro spoke to me is because my husband works long, crazy hours and is difficult to reach by phone. He had told the uro in person that any information that had to be relayed to him (good, bad or indifferent) could be told to me, his wife. I have been with him on most appointments and of course through the whole urine retention and TURP procedure in 9/2009. So that office and uro are familiar with me.
 
I was surprised too that no gleason score was given. Does that mean its a better or worse diagnosis?
 
The CT and bone scans have been scheduled for Thursday, May 12. Is this standard procedure for a pc diagnosis? The uro did say that normally they do the meeting first, then the scans but he wanted the results of the tests before he met with us.
 
We are in the Raleigh area but very close to Duke(Durham) and UNC(Chapel Hill) which are notably good hospitals in this area.
 
I really appreciate the warm welcome and great/useful information that you all have provided us with.
 
I will keep you posted of the final results after Tuesday's meeting. Take care all!
 
 
 

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7085
   Posted 5/10/2011 3:37 PM (GMT -6)   
To try to answer why the Gleason was not given would be blind speculation, which won't help right now.
 
I would suggest that the scans be done (I did both in a day, no pain, no suffering, just a lot of time on my back), and then go for the review. Take along the pocket recorder, ask the doctor politely if you can use it, then listen to the session again the next day. You will be amazed what was discussed that just blew over your head.
 
Don't leave that session without a copy of the lab / biopsy report, and ask at the scan facility for image copies/reports to be sent as well (it may take longer for them to put the images on a cd, so don't expect same day service). Just to have them should the need arise later, regardless of the current situation.
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